Parents’ Concerns About Issues Related to Their Children's Genetic Conditions

Authors


  • Agatha M. Gallo, PhD, RN, FAAN, is a Professor, and Emily K. Hadley, MS, RN, is a Project Director, Department of Maternal Child Nursing, College of Nursing, University of Illinois at Chicago, Chicago, IL; Denise B. Angst, PhD, RN, is Director, Advocate Center for Pediatric Research, Advocate Health Care, Oak Brook, IL; Kathleen A. Knafl, PhD, RN, FAAN, is the Elisabeth N. Gray Distinguished Professor and Senior Associate Dean for Research and Faculty Affairs, Oregon Health and Science University, Portland, OR; and Carrol A. M. Smith, PhD, RN, is a Postdoctoral Research Fellow, School of Nursing, University of Michigan, Ann Arbor, MI.

Author contact: agallo@uic.edu, with a copy to the Editor: roxie.foster@uchsc.edu

Abstract

PURPOSE. The purpose of this analysis was to examine parents’ (N = 142) concerns about issues (i.e., privacy of information, insurance, healthcare costs, employment, school) related to their children's genetic conditions.

DESIGN AND METHODS. Using a series of matrices, thematic analysis was conducted focusing on parents’ concerns.

RESULTS. Parents were less concerned with privacy and more concerned with insurance, healthcare costs, employment, and school issues.

PRACTICE IMPLICATIONS. Nurses and other healthcare professionals need to give parents the opportunity to discuss their concerns and to assist parents with strategies and resources to meet the needs of their children and families.

Ancillary